Should I go to Mayo? Chronic Kidney Disease

Posted by gladiator14 @gladiator14, Aug 26 9:35pm

I am 67 years old and recently diagnosed as Stage 3B. My Internist/nephrologist in Iowa always told me my GFR and Creatinine abnormal chemistries were “just my normal”. I drove to Mayo (5 hours) for a surgical consult for a GI issue back in March 2020. After my visit my internist asked me what Mayo said about my kidneys. I was in shock that he was now asking me this as I had been his patient for the entire 15 years of my altered GFR and Creatinine. Getting nervous I immediately set an appointment with a nephrologist at the University of Iowa. I also found another internist. The U of I nephrologist told me the news of Stage 3B and ordered an ultrasound which found a sizable cyst on one side and a good size stone in the other. I was basically told we will watch things and nothing else. No information about diet or anything else was provided. I have found these different web sites and have pieced together that I should be limiting my sodium to <1500mg/day and protein to <65g/day based on my weight. I have I had a blood test a month ago and my eGFR was 38 and creatinine was 1.79. I had another blood test Monday which showed eGFR 37 and creatinine 1.83. I have been following the diet for 2 weeks. I am more than disappointed. A month ago based on my labs and a 24 hour urine I was put on 10MEQ potassium citrate, Atorvastatin. I was previously on Pantoprazole for my GI issues and Amlodipine for hypertension. My question is does anyone feel it would benefit me to come to Mayo for another opinion. Any help is appreciated.

In my opinion you definitely should go to Mayo, if you can. I did so several years ago for both kidney and bladder and have been nothing but satisfied since. The doctors and nurses take time with you, explain everything to you, and the philosophy is that the patient comes first. If you want answers and options, the long car ride is worth it.

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@lagrange5

In my opinion you definitely should go to Mayo, if you can. I did so several years ago for both kidney and bladder and have been nothing but satisfied since. The doctors and nurses take time with you, explain everything to you, and the philosophy is that the patient comes first. If you want answers and options, the long car ride is worth it.

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Thank you.

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I would definitely suggest an appointment at Mayo. I went for 5 years messing around in Michigan. Spent some time in July and got diagnosed and help.

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Oh my goodness, I usually try not to reply to many posts but Run to the Mayo not walk!!!. I was miss diagnosed in 2015 in Las Vegas, Nevada, with that said I have pulmonary problems and if it was not for the Mayo in Arizona I'm not sure what the outcome would have been. I was diagnosed with a rare disease that needed swift attention which I received at the Mayo. I cannot say enough good things about them, and the peace of mind it brings you just to know you have a team working with you not just one Doctor. Best of luck and please give the Mayo a chance to help you.

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A native Minnesotan now living in Pennsylvania, I had four operations at the Mayo Clinic in one year, all having to do with urological problems. I wound up at the Mayo Clinic almost by accident. As I began experiencing urological problems in 2012 and not finding adequate medical care in central PA, I began calling around for an appointment. I called the Cleveland Clinic, Johns Hopkins (my alma mater), The University of Wisconsin where my daughter was a post doctoral student, The University of Minnesota. All were unable to schedule an appointment for me within a reasonable time. Luckily The Mayo Clinic, which I heard about a lot growing up in St. Paul, was able to schedule a diagnostic appointment within a few weeks and four surgeries starting in February 2013. After the surgeries, I scheduled follow up appointments starting every three months, then every six months, then every nine months, then once a year. Now I go back for a yearly exam and checkup. From the beginning the Mayo Clinic impressed me greatly for its efficiency, its quality of service in several different areas, and the kindness and professionalism of the medical personnel and staff. I recommend the Mayo whole heartedly based on my now seven years of experiencing at first hand how well and professionally they treat their patients. John Keller

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@gladiator14 – Did your nephrologist at Univ of Iowa tell you anything about the drugs that he wants you to take? I hope you have a follow-up appointment soon so you can get some answers like: What are they supposed to do? How long until you see results? What kind of diet, as well as how you will know whether it is working to your advantage? I believe that I would get him to answer those questions for you. Also a phone call to Mayo is another possibility to learn whether an appointment would be an option.
I want to introduce some members who have experience with Mayo and/or CKD to share their insights and experience – @cmael @ca426 @marvinjsturing @jolinda @2011panc @cehunt57 – What do you have to say to @gladiator14about his situation?

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Thank you, Rosemary. My nephrologist at Iowa has really given me no guidance at all. I was given the diagnosis, an Ultrasound that revealed a cyst in one kidney and a large stone in the other. A 24 hour urine was ordered and I had to ask her if she wanted to follow through with the recommendation for Potassium Citrate made in the report. I have had no dietary guidance at all. I have done my own research and lucky that I have enough background as a chiropractor to understand what I am reading. My internist has been listening to my research findings and the two of us have basically set up my plan. I am going to try and set an appointment if after my next monthly blood test it doesn't at least stabilize. My blood tests over the last 2 months have shown a very slight decline from eGFR 38 to 37 and creatinine was 1.79 and changed to 1.83. My Internist did not think it was significant. I appreciate your response.

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I was once told by a nurse practitioner that you if you are experiencing a medical issue that is affecting your life, you should see the right specialist. For me that has been Mayo Clinic. After going through 4 local urologists, I travelled to Mayo where I saw the urologist who performed surgery and who I now see annually for almost 10 years. My local nephrologist could only scratch his head at my problem. When I went to Mayo I saw a nephrologist, hypertension nurse, renal nurse educator, and dietitian, all of whom got to the cause of my problem, taught me how to manage it, and have continuously given me dedicated professional treatment. I can’t say enough about the Mayo Clinic.

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@gladiator14 I sense from your question that you are unsettled about the information and care you have received thus far. I ABSOLUTELY think you would benefit from a second, third, or forth opinion! I joke with a fellow transplant patient that most people wouldn't remodel a bathroom without talking to three contractors but they trust their life to the first doctor they meet. Doctors (like bathroom contractors) exist in good and bad versions everywhere you go the trick is putting in the hard work to find them. I see doctors both at Mayo and outside of Mayo and I have them all exchange records electronically. I choose my physicians based on a variety of factors that are personally important to me not what institution they affiliated with or the state they live in. In my experience I have encountered a greater concentration of brilliant providers at Mayo than anywhere else. So if you are looking for a shortcut in finding a good doctor the odds are stacked in your favor by choosing Mayo. Best of luck.

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I can’t say enough good things about Mayo. I had a kidney transplant two years ago in April. My daughter was the donor. My GFR was about 13 at the time. I was 75 and thought my age may be a factor. They weren’t concerned as long as my several tests… stress echocardiogram, aortic artery ultrasound, blood work and more were not showing any problems. Everything went good with the surgery after a bit of an adjustment in my immunosuppressants. The nurses on the transplant floor are the nicest people we’ve ever met. My daughter had a great experience, too. Mayo is so efficient and the communication between departments is awesome and I believe they do a good job at keeping the costs down.

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@rosemarya

@gladiator14 – Did your nephrologist at Univ of Iowa tell you anything about the drugs that he wants you to take? I hope you have a follow-up appointment soon so you can get some answers like: What are they supposed to do? How long until you see results? What kind of diet, as well as how you will know whether it is working to your advantage? I believe that I would get him to answer those questions for you. Also a phone call to Mayo is another possibility to learn whether an appointment would be an option.
I want to introduce some members who have experience with Mayo and/or CKD to share their insights and experience – @cmael @ca426 @marvinjsturing @jolinda @2011panc @cehunt57 – What do you have to say to @gladiator14about his situation?

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@gladiator14 Is there any benefit from you returning to Mayo for your renal issues? Definitely. You will have access to specialists for your kidneys, blood pressure, medications, diet, nutrition, heart and digestive system. All of these systems interact and need to be followed and understood to the best of your ability. Best of all, Mayo will provide you with a plan of care, testing and results, and ANSWERS! Please go for your best possible outcome and peace of mind. You have started a difficult journey that will be much easier to traverse using the assistance available at Mayo. Please go.j

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@lagrange5

I was once told by a nurse practitioner that you if you are experiencing a medical issue that is affecting your life, you should see the right specialist. For me that has been Mayo Clinic. After going through 4 local urologists, I travelled to Mayo where I saw the urologist who performed surgery and who I now see annually for almost 10 years. My local nephrologist could only scratch his head at my problem. When I went to Mayo I saw a nephrologist, hypertension nurse, renal nurse educator, and dietitian, all of whom got to the cause of my problem, taught me how to manage it, and have continuously given me dedicated professional treatment. I can’t say enough about the Mayo Clinic.

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Thank you.

Liked by gladiator14

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@jolinda

@gladiator14 I sense from your question that you are unsettled about the information and care you have received thus far. I ABSOLUTELY think you would benefit from a second, third, or forth opinion! I joke with a fellow transplant patient that most people wouldn't remodel a bathroom without talking to three contractors but they trust their life to the first doctor they meet. Doctors (like bathroom contractors) exist in good and bad versions everywhere you go the trick is putting in the hard work to find them. I see doctors both at Mayo and outside of Mayo and I have them all exchange records electronically. I choose my physicians based on a variety of factors that are personally important to me not what institution they affiliated with or the state they live in. In my experience I have encountered a greater concentration of brilliant providers at Mayo than anywhere else. So if you are looking for a shortcut in finding a good doctor the odds are stacked in your favor by choosing Mayo. Best of luck.

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I appreciate your response.

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@cmael

I can’t say enough good things about Mayo. I had a kidney transplant two years ago in April. My daughter was the donor. My GFR was about 13 at the time. I was 75 and thought my age may be a factor. They weren’t concerned as long as my several tests… stress echocardiogram, aortic artery ultrasound, blood work and more were not showing any problems. Everything went good with the surgery after a bit of an adjustment in my immunosuppressants. The nurses on the transplant floor are the nicest people we’ve ever met. My daughter had a great experience, too. Mayo is so efficient and the communication between departments is awesome and I believe they do a good job at keeping the costs down.

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I am glad you and your daughter are doing well. Thank you.

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